When does the P2P report come out?

[caledonia]

I thought it was mid Feb, due to the FOIA info.

Someone is telling me they heard at the CFSAC it's now January?

 

[Denise]

I thought it was mid Feb, due to the FOIA info.

Someone is telling me they heard at the CFSAC it's now January?

There are a number of documents coming up.

The FINAL version of the AHRQ evidence review comes out on DECEMBER 9th (should be posted on the AHRQ and P2P sites). I do not know when the document on the disposition of submitted comments is released though. (count these are documents # 1 and 2)

The draft P2P report should come out close to 24 hours after the close of the meeting (so the 11th or 12th of December).
The clock for submitted comments starts ticking right away and we have 30 days (from the release of the draft report) to submit comments about the contents of the report.
I believe the next step is that the panel goes over the public comments and does final edits and 2 weeks after that releases the final report.
So at a guess, I think the final P2P report comes out before the end of January.

As I understand the timeline, the IOM reports comes out mid-February or early March. (fwiw - based on the timeline, I am pretty sure IOM has finished all of its writing, editing and both the internal and external review of the document.)

 

[caledonia]

There are a number of documents coming up.

The FINAL version of the AHRQ evidence review comes out on DECEMBER 9th (should be posted on the AHRQ and P2P sites). I do not know when the document on the disposition of submitted comments is released though. (count these are documents # 1 and 2)

The draft P2P report should come out close to 24 hours after the close of the meeting (so the 11th or 12th of December).
The clock for submitted comments starts ticking right away and we have 30 days (from the release of the draft report) to submit comments about the contents of the report.
I believe the next step is that the panel goes over the public comments and does final edits and 2 weeks after that releases the final report.
So at a guess, I think the final P2P report comes out before the end of January.

As I understand the timeline, the IOM reports comes out mid-February or early March. (fwiw - based on the timeline, I am pretty sure IOM has finished all of its writing, editing and both the internal and external review of the document.)

Thanks for your reply.

 

[Anne]

Final evidence review has been published:
http://www.effectivehealthcare.ahrq.gov/ehc/products/586/2004/chronic-fatigue-report-141209.pdf

Did they change anything for the better?

(or is this and the P2P being discussed in another thread? couldn't find one)

 

[user9876]

Final evidence review has been published:
http://www.effectivehealthcare.ahrq.gov/ehc/products/586/2004/chronic-fatigue-report-141209.pdf

Did they change anything for the better?

(or is this and the P2P being discussed in another thread? couldn't find one)

Its improved from the previous version. They describe the PACE recovery criteria as contradictory. But that is somewhat buried after they quote the results.

Given that a score of 65 or less on the SF - 36 physical functioning scale was defined as disability for entry in
to the trial, using a score of 60 or greater on the same scale to define recovery is contradictory.

 

[alex3619]

Given that a score of 65 or less on the SF - 36 physical functioning scale was defined as disability for entry in
to the trial, using a score of 60 or greater on the same scale to define recovery is contradictory.

While accurate this is one of the least important issues about PACE. There are far more extreme mistakes, though also more subtle and so hard to pick up on. Did they mention what age equivalent SP-36PF of 60 was?

 

[BEG]

Please check this link for accurate info. about dates, etc.
https://prevention.nih.gov/programs...revention/workshops/me-cfs/workshop-resources

 

[Wally]

I called the Office of Disease Prevention at 3:00 pm E.S.T. (12/18/2014) to check on when the Draft P2P Report would be posted and I was told they were still working on getting it posted on the website. I asked if it would be posted by the end of business today, but I was told they did not have a time frame for when the report would be posted other than it was planned to post today.

 

[Esther12]

I was rather hoping they'd realise that they needed more time.

My expectations are low for something that's taken a week... hopefully they'll mess it up in our favour for once.

 

[Dreambirdie]

@caledonia There are people spreading a lot of misinformation about your advocacy project on FB. It would behoove you to address that ASAP. I tried to PM you, but that was not possible due to the fact that I am blocked.

 

[jimells]

I'm surprised they aren't waiting until late Friday afternoon to post it. That is a famous trick by DC Dunces who are ashamed of their work and are hoping the stenographers, ahem, establishment journalists forget all about it by Monday AM.

 

[Denise]

P2P draft report
https://prevention.nih.gov/docs/programs/mecfs/ODP-MECFS-DraftReport.pdf

 

[jimells]

"Executive Summary"??? Really? I thought this was supposed to be a real report, not a Summary for Dummies.

 

[Wally]

Here is a message I sent to Dr. David Murray, after spending most of the afternoon trying to find out when the P2P Draft Report would be posted. Unable to get through to the Office of Disease Prevention during the day except for one phone call at 3:00 pm (noted above in Reply No. 8), I spent the rest of the afternoon making phone calls to the Office of the Secretary of the HHS, Office of the Asst. Secretary of the HHS and, the Office of the Director of the N.I.H. to see if I could obtain any additional information about the posting of this document.

At around 5:20 pm (EST), Dr. Francis Collins' assistant tried to contact the Office of Disease Prevention, but she was not able to reach anyone. She was very surprised that I had so much difficulty reaching this Office because they normally have six people available to answer phone calls. She suggested that I contact the Asst. Director of ODP, Dr. Murray, by e-mail. She provided me with a link to the e-mail directory for the N.I.H. where I could find Dr. Murray's e-mail address.

Here is the link that I was provided for the directory of e-mail addresses for the N.I.H. (NED@NIH.gov). Set forth below is the e-mail I sent to Dr. Murray (with a cc to Dr. Collins, NIH Director) and Dr. Murray's (prompt) response to my inquiry. It appears that while I was drafting/sending my e-mail to Dr. Murray, the Draft P2P report was being posted on the ODP website.

Timing for Public Posting of the Draft P2P Report for ME/CFS

From *********
To DAVID.MURRAY2 DAVID.MURRAY2@NIH.GOV
Cc francis.collins francis.collins@nih.gov

Thu, Dec 18, 2014 2:45 pm

Dear Dr. Murray,

It is my understanding that the Draft P2P Report for ME/CFS would be posted today (12/18/2014). I have tried contacting your office multiple times today to determine if the Report would be posted by close of business today (12/18/2014). I was only able to get through to your office at 3:00 pm (EST) and I was told that "they were working on getting the report posted, but no time frame on the 18th could be provided for when the report would be available for viewing on the ODP website. It is now 5:30 pm (EST) and the Draft Report has still not been posted on the ODP website nor has any information been posted on the website or by e-mail notification that there will be a delay in posting.

As a patient with this illness, I am very disappointed that your office made a public announcement that the draft report would be available today and no one in your office was able to answer 1) if the date of posting of December 18, 2014 was to be before close of business, or 2) by the end of the day at 11:59 pm (E.S.T.) on December 18, 2014, or 3) if the posting of the report would be delayed and no posting would occur on December 18, 2014.

I would appreciate a follow-up communication to this e-mail with an explanation as to the current status of the posting of the Draft P2P Report for ME/CFS.

Very truly your,

***************
(***)
*

*I request that my contact information be redacted should this e-mail communication be released to the public.

Re: Timing for Public Posting of the Draft P2P Report for ME/CFS

From Murray, David (NIH/OD) [E] (NIH/OD) [E] david.murray2@nih.govhide details

Thu, Dec 18, 2014 2:58 pm
To xxxxxxxx

M********,

The draft report went live on our website at about 5:30 today. You can find it
at:

https://prevention.nih.gov/docs/programs/mecfs/ODP-MECFS-DraftReport.pdf

I’m sorry you had trouble reaching our office. We had an end-of-year staff
luncheon midday, but you should have been able to reach us this morning or later
this afternoon.

David Murray

***************************************************
David M. Murray, Ph.D.
Associate Director for Prevention
Director, Office of Disease Prevention
Office of the Director
National Institutes of Health
NIH/OD/DPCPSI/ODP
tel: (301) 496-1508
fax: (301) 480-7660 6100 Executive Boulevard, 2B03
david.murray2@nih.gov<mailto:david.murray2@nih.gov> Rockville, MD
20892

Wanda Davis
Assistant to the Director (301) 496-1508
Office of Disease Prevention wanda.davis@nih.gov<mailto:wanda.davis@nih.gov>

 

[jimells]

32 ME/CFS exists.

Well Halleluiah!

52 ...and a research focus on men

This is strange, because later on the report complains that studies are mostly female patients:

88 Clinical studies have focused on predominantly Caucasian, middle-aged women.

92 Although psychological repercussions (e.g., depression) often follow ME/CFS, this is not a psychological disease in etiology.

Note the careful use of the word "etiology". This fits in with Sir Weasel's theory of a biological etiology that is continued by the insistence of the patient to think the wrong thoughts. This is left unspoken in the above quote.

99 Future studies should distinguish between ME/CFS alone, ME/CFS with comorbidities, and other 100 diseases

What about distinguishing between ME and CFS! So far, this document completely ignores this issue and the entire history of the naming debacle. We don't know if the authors think "ME/CFS" is one illness with a funny compound name, two illnesses somehow jammed together, or something else. Really, we have no idea what exact illness this report is even talking about!

105 A clear case definition with validated diagnostic tools is required before studies can be conducted.

Is this a statement of the obvious or an excuse not to fund any more research?

113 Existing treatment studies (cognitive behavioral therapy [CBT] and graded exercise therapy [GET]) demonstrate measurable improvement, but this has not translated to improvements in quality of life (QOL). Thus, they are not a primary treatment strategy and should be used as a component of multimodal therapy.

Looks like they're trying to thread the needle here. They didn't study the PACE garbage very close, or have chosen to ignore its obvious flaws. It's hard to understand how any sincere person could think that the claimed study improvements should trump actual real-world experiences that contradict study results, especially after admitting that contradiction.

135 In many cases, lack of instructions or guidance for including graded exercise therapy often causes additional suffering, creating fear of harm from a comprehensive self-management program that may include some physical activity

So GET creates a "fear of harm" but no actual harm? This is really, really bad. It implies that GET would work if only it were properly implemented.

159 Patient- centered tools that use simple statements need to be developed to ensure that the patients understand the questions.

I fail to see how better subjective questionnaires will move the science forward, although maybe they can sort-of help clinicians make a diagnosis? But if a clinician needs to use a questionnaire to make a diagnosis, are they really qualified to diagnosis this illness?

191 The dissemination of diagnostic and therapeutic recommendations should focus on primary care providers.

Nope. Nada. NO. GPs have no business managing this illness on their own. No one would expect a GP to manage any other severe, complicated multi-systemic disease. Patients will never receive proper diagnosis and treatment until there are competent specialists accessible to everyone with this illness.

198 Findings in the literature are inconsistent, and there are many gaps (e.g., Is ME/CFS one disease?).

Well, how did this little tidbit get slipped in past the psychobabblers? But still, how about, "Is ME CFS?"


At Line 200 the report moves into recommendations. They are so obvious, I hope they didn't have to strain to hard to come up with them.

213 Create new knowledge. Investing in bench-to-bedside to policy research for ME/CFS is recommended

Huh. "Create new knowledge" and do some research. Why didn't I think of that. Looks like whoever paid for their fancy degrees got their money's worth.

244 Researchers should be encouraged to develop a repository for qualitative and quantitative work. Similar to cancer registries, there is much to learn by developing a registry/repository of all patients with ME/CFS

This has already been rejected by HHS. The report writers probably don't know that.

282 Studies addressing biopsychosocial parameters (including the mind-body connection), function, and QOL should be encouraged.

A grab-bag of recommendations naturally has to include something for everyone, especially the psychobabblers.

313 We believe ME/CFS is a distinct disease that requires a multidisciplinary care team (e.g., physicians, nurses, case managers, social workers, psychologists) to optimize care.

But no neurologists/endocrinologists/immunologists to treat patients with a neuro/endo/immuno illness? REALLY?

362 The modest benefit from CBT should be studied as adjunct to other modalities of treatment such as self-management..

Never miss a chance to promote psychobabble!

365 We recommend that the NIH and the FDA convene a meeting on the state of ME/CFS treatment.

Yup. Let's have a meeting to discuss if we should have more meetings

379 Thus, for needed progress to occur we recommend (1) that the Oxford definition be retired, (2) that the ME/CFS community agree on a single case definition (even if it is not perfect), and (3) that patients, clinicians, and researchers agree on a definition for meaningful recovery..

Finally, something specific, helpful, and doable. Thank you. The "community" (excepting psycobabblers, of course) already seems to agree on the CCC. Too bad the report doesn't mention that and recommend the CCC for adoption. But I don't imagine that would be allowed.

384 We believe there is a specific role for multimodal therapy.

Anybody know what this is? Smells like CBT and GET to me.


Well that's it. No footnotes. No references. No data. The Evidence Review was not included by reference. I guess that's what makes it "Executive" material!

p.s., the line numbers are part of the original document.

 

[Denise]

A discussion of the report has begun in this thread:
http://forums.phoenixrising.me/index.php?threads/p2p-draft-report-is-has-been-posted.34479/